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It's the scenario many people fear the most: ending up in a coma or on life-support, unable to tell doctors whether you want to live or die. A "living will" is supposed to take care of that eventuality, specifying what kind of medical treatment should be used if a patient is gravely ill and unable to communicate. But while surveys show that a majority of potential patients like the idea of a living will, only 9 percent of Americans have signed them.
For some, the hesitancy comes from a general cultural unease with the topic of death. Even many physicians who want to help patients die with dignity - that is, without painful and intrusive interventions - prefer not to bring up actual scenarios of dying. For persons who know they want living wills, the barriers may be practial: How does one draw up such a document and make sure it sticks?
Seven years ago, physicians Linda and Ezekiel Emanuel observed these predicaments in their separate practices. Linda Emanuel is a general internist at Massachusetts General Hospital and assistant director of the division of medical ethics at Harvard Medical School; her husband is an oncologist and medical ethicist at the Dana-Farber Cancer Institute. The Emanuels noted that,among gravely ill patients, four medical conditions in prticular caused doctors and family members to agonize over how to proceed. These medical crises, including coma and dementia, begged for insight into what treatments the patient would have wanted - details a living will might well have provided.
"We thought it was time to create a comprehensive document that didn't exist out there," says Ezekiel Emanuel. Relying on their clinical experiences, the husband-wife team drew up the most specific and far-reaching draft of a living will not availalble. Their "Medical Directive," as they call it, lists four possible states of incapacity and 12 common medical procedures. It asks the signator to consider these four conditions and decide in each case which of the 12 medical interventions they would want.
The four medical situations reflect circumstances in which the patient would be unable to communicate with others. The first is a coma or a persistent vegetative state in which doctors see no hope of recovering brain function; the second is a coma from which there is a remote chance of full recovery, a slight chance of survival with permanent brain damage, and a good chance of no recovery; the third involves irreversible dementia, which make the patient unable to recognize people or speak understandably, coupled with terminal illness; the fourth involves the same type of dementia, but without terminal illness.
The 12 listed medical treatments are common in these often futile situations. They range from cardiopulmonary resuscitation, mechanical breathing, and chemotherapy to the use of blood transfusions, antibiotics, and pain medication. For each of the four medical situations, a person can: order the intervention; try it but stop if there's no clear improvement; reject the treatment; or indicate that he or she is undecided.
Making these choices means grappling with deeply personal questions: If I become comatose, would I want electric shock to keep my heart beating? If I am terminally ill and demented, would major surgery improve or degrade the quality of my life? What kind of medical condition, if any, would cause so much suffering that any attempts to prolong my life would be unacceptable? Constant pain? Permanent dependence on others?
Interestingly, the Emanuels found that people welcome the specificity of this form. "They're very well informed," says Linda Emanuel. "Contrary to many professional opinions, they don't react badly to the topic. They feel the doctor is finally taking the time to listen to what they want, to consider the total patient." Even young adults in good health explore these questions. "They're more culturally adjusted to the notion of controlling their own health care," he says. Frequently, people identify with right-to-die cass that make the headlines, court battles in which the families of youmg, comatose patients sue to withdraw treatment.
In an ongoing study at Mass. General, the Emanuels are examining the use of living wills. Though they can't yet release their results, they do note that most patients have clear ideas about preserving the quality of life near death, and many choose to avoid life-saving intervention in the four scenarios the Emanuels outline.
Doctors, too, appear to approve the clear language in this living will, in part because it helps initiate an exchange with patients. "There is no doubt that it's hard to talk about these issues, even with elderly patients," says Ezekiel Emanuel. "Doctors would like to know. Patients would like to talk about it. But no one can break the ice. Yet we desperately need guidance from our patients. One of the most anxiety-provoking situations is not knowing what to do when a patient is comatose and the relatives are far away or haven't talked with the person."
More pragmatically, living wills can reduce the incidence of malpractice suits by strengthening the bonds between doctors and patients and helping physicians carry out patients' wishes. "A high percentage of the cases that have come to court would never have reached court if there had been a living will," says Linda Emanuel.
Is a living will legally enforecable? All but nine state officially recognize these documents. Although Massachusetts is one of the states that have no such statute, the state Supreme Judicial Court has ruled that any written directive in which people explicitly present their views about such medical treatment is binding. In this past summer's US Supreme Court decision involving Missouri resident Nancy Cruzan, who has been unconscious and tube-fed since a 1983 car accident, the justices left to each state the issue of deciding under which condiions life-sustaining medical treatment would be ended. (In the Cruzan case, they ruled that the woman must remain on life-support, based on an unusual provision of Missouri law that charges the state with "promoting life.")
Vague language is the downfall of many living wills. The phrase "no heroic measures," for instance, means different things to different people. Some physicians consider cardiopulmonary resuscitation routine, while others view admission to an intensive care unit as heroic. In drafting a living will, it's best to avoid ambiguity in favor of precisely worded medical conditions and treatments. For example: "I don't want artificial nutrition or hydration if I fall into an irreversible coma."
The Emanuels' living will (a copy of which can be obtained for $5, or five copies for $10, from Harvard Medical School Health Letter, 164 Longwood Avenue, Boston, MA 02115) also has provisions for a durable power of attorney and organ donation. The durable power of attorney authorizes a proxy to make medical decisions, including the decision to stop life-supports, if the wishes expressed in the living will are insufficient or undecided. (In Massachusetts, a similar court procedure has evolved based on the principle of "substituted judgment." It holds that doctors and families - or judges, if the case is brought to court - can decide whether an unconscious person would have wanted treatment.)
In the Emanuels' living will, a person can also name a backup proxy if the first choice is unavailable. Experts advise choosing people who understand one's philosophy about life and death. The organ-donation clause allows the patient to make an anatomical gift to any institution for a variety of purposes, including transplantation and research.
Like all living wills, the Emanuels' should be signed and dated by the prospective patient, as well as by two witnesses. Though it needn't be notarized, it should be distributed to doctors, family members, and friends, so that the patient's wishes are accessible. It's a good idea to update the document from time to time. Most important, one should discuss the implications of each decision with a doctor. Even a seemingly mild intervention such as antibiotics, which may not be painful or intrusive, may prolong an unbearable situation.